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Cause of ME a "state secret" in UK?

Discussion in 'General ME/CFS News' started by Min, Dec 12, 2009.

  1. muffin

    muffin Senior Member

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    It's not so much a State Secret when we can take some educated guesses as to what may be in a locked document. But, we do need to know exactly what they are hiding so that it is out in the light of day, can be dealt with, and those involved (Weasel, white, sharpe, et al) and the US morons (Reeves, et al) can be dealt with by the law. I do think that at some point this 83 year locked down document will be opened, sooner rather than later. Many of us have requested access to that document. Many of the UK folks have requested that their Parliament Reps also request/demand access to that document. I would bet that soon enough we will find out just what is in that document and some of the dirty laundry that the sociopaths in the UK and US have hidden away from us sick - and the rest of the world's healthy (healthy, thus far).
    I and my husband both requested access to that document and got the standard stupid reply - as expected. But I wanted them to know that we are all watching and aware. And we are...
     
  2. muffin

    muffin Senior Member

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    CFIDS, ME, XMRV, WikiLeaks - Wish those with inside info would do the right thing

    Those on the "inside" of CFIDS/ME would come clean on their own and go to Wikileaks with solid documents and expose the truth - finally. They would NOT need to get whistleblower protection, just send off documents showing all the little games that the CDC/CFS William Reeves and others going back in time have done to CFS/ME. Ditto for those from the UK who are aware of what has been done to the citizens of the UK by the Weasel, white, sharpe and other nutters.

    How people can stand by and know that wrong doings against other humans has been comitted and say and do nothing to fix it is beyond me. I could not sleep at night, nor look in the mirror at myself if I was aware of this sort of terrible cover-up. It would kill me to keep it to myself.

    But with Wikileaks, these people could give the documents to the Wikileaks people and walk away feeling clean - and knowing that they finally did the right thing by millions of sick people and the rest of the world that is a sitting duck for a possibly deadly retrovirus.
     
  3. max

    max *****

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    Fd 23/4553/1

    Hi

    Whilst holding my breath for the FDA/NIH XMRV paper release I just wanted to let you know I am still following the National Archive FOI trail - It is NOT a dead end - yet.

    My latest request for information is currently in the hands of the Head of Freedom of Information - I am also awaiting a FOI request for information held by the MRC - IF the XMRV study is positive then I have a feeling the National Archives will surrender FD 23/4553/1.

    Can anyone confirm that the UK has now placed a lifetime ban on blood donation from ME/CFS sufferers?

    bye for now
     
  4. Mark

    Mark Acting CEO

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    Sorry I don't have the link, but there was a news item only a few weeks ago, large numbers of people working in mental health and psychiatric services have recently been paid off to sign some kind of new non-disclosure agreement, or it may have been the official secrets act, I don't recall exactly. As you rightly say, people can still leak documents on wikileaks - but a lot less people can testify now. More convenient timing perhaps...
     
  5. Mark

    Mark Acting CEO

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    I'm serious, I want to know the answer to that. Secret cancer files, secret diabetes files, no? Is it just for ME/CFS? It makes a huge difference to the potential significance of the files. If they don't exist for comparable scenarios then the idea that they are purely routine to protect names of patients or study participants is disproved.

    Oh and by the way I'm sure this has already occurred to people, but assuming XMRV=ME/CFS, then if there is something interesting in them, these really would be the X-Files...
     
  6. ukxmrv

    ukxmrv Senior Member

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    The UK patients who have viewed the redacted copies of the files have found quite a lot of interesting information about the MRC. It's just such a pity that UK journalists are not interested in following this up.

    Never mind the closed parts of these files, the open parts are important history.
     
  7. cigana

    cigana Senior Member

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    The latest request by the Countess of Mar has received the usual response:

    http://www.mecfsforums.com/index.php/topic,5021.0.html

    I think a change of tack might be appropriate here. Rather than many of us endlessly asking them for access, we should be asking the Minister of Sate for Justice exactly why "sensitive personal data" is more important than the health of a quarter of a million UK citizens...
     
  8. Mark

    Mark Acting CEO

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    Framing suitable questions to get the answers you want is a matter of great skill; in many cases it is entirely a matter of working out exactly the right question to ask.

    I don't know what that question is, but I return once again to what I think could be the best avenue to explore: still nobody seems to be able to answer me this question: Are there any files like these for any other illnesses? I've heard there's one for MS as well. These files are supposedly kept secret because they contain personal data of patients. OK then: so in that case there's absolutely no reason why there shouldn't be equivalent files for every other medical condition going. Are there, or not? If there are, then this whole issue is probably a red herring. If there aren't, then it probably isn't, and the question to ask would be something (very roughly) like:

    "Is the minister aware that the existence of secret files regarding ME/CFS is causing growing concern internationally amongst the ME/CFS patient community, many of whom believe these files conceal something sinister? Can the minister please explain, if the reason for the secrecy is simply the protection of patient data, why there are no similar files held under the official secrets act for other medical conditions? What is so special about ME and MS, that the government holds files regarding these conditions that contain patient information, but not regarding other medical conditions?"

    Obviously that wouldn't result in the answer: "OK then, it's a fair cop, here are the files" - the usual fobbing-off can be expected. But the objective is to frame the question in such a way that the issue attracts the attention of MPs to the extent that they suspend their disbelief and start to ask themselves: Hold on, now that really is a bit odd...

    That is: assuming there aren't such files in abundance for other illnesses, of course...

    Similarly, a carefully-worded and stark question is also needed regarding the funding issue - something (again, very roughly) like:

    "Research into ME, including biomedical research, has been stated as a 'strategic priority area' for MRC funding for over a decade (? or however long that has been the case ?). In light of that supposed strategic prioritisation, can the Minister explain why the MRC has still never funded a single piece of biomedical research into ME (? or sum the paltry total that could be said to be 'biomedical'), and why only 115,000 was spent on ME research in the last financial year? What steps can he suggest in order to oblige the committee to begin approving research other than that proposed by psychiatrists, in compliance with government policy?"

    Again, this is not expected to produce much more than flannel - and my wording isn't actually valid: these kinds of questions need to be very specific and factual rather than open-ended like this, so I'm just thinking aloud here...but the point is that you have to ask the right kind of question. There's no point asking the same question over and over; it's an advanced game of cat and mouse and we really need to work out the exact question to pin them down.

    The big problem we have had with recent questions is that they don't have such a category as "biomedical research", as the latest parliamentary answer made clear...so next we need to know what categories they do use and go to work on that. We could also turn it round, if there's no equivalent to a 'biomedical' category, and ask for the proportion of total funding, in the last 10 years, where one of the principal investigators was a psychiatrist...you have to find a way to turn it round and get that answer you were looking for. (And yes, I know we can calculate the answer to that last question ourselves, but that's not the point: the key thing is to get it stated on the record in those terms: their current answers are misleading parliament).

    You can guarantee one thing: they are not going to volunteer anything here. You have to dig out every word: but they have to answer the question...
     
  9. SilverbladeTE

    SilverbladeTE Senior Member

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    Somewhere near Glasgow, Scotland
    Hey, after "T-4" and the "Final Solution" it gave a lot of scumbags ideas, and lessons on what not to do, and therefor, how to get away with it.

    This is a mixture of genuine moronic indifference and stupidity
    and genuine, premeditated mass-murder by deliberate neglect and refusal to give medical treatment.

    if you think I am kidding or over-reacting:

    note the massive role' psychiatrist, eugenicists, doctors, bureacratic mumbo-jumbo and media manipulation took place in the Nazi racist and disabled murder schemes.
    Note how killing off the disabled was about "saving money" and how our UK government has acted for over 30 years, and especially in regards to cover ups and denial of help of those poisoned, injured, irradiated and diseased by government criminal abuse and screw ups.
     
  10. boomer3

    boomer3

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    I read this page today
    http://www.prohealth.com/fibromyalgia/blog/boardDetail.cfm?id=893379

    http://www.bariumblues.com/mycoplasma_nexus.htm
    http://www.rense.com/general18/mcc.htm

    And thought - we are the people and the mothers of children who has been violated big time by the last people you expect this to happen by. And what makes it so dirty is that this family secret goes on for decades as though it never happened. No one came forward to say it wasn't true. The disease does not exist.

    The only few psychiatrists needed are those who can help a dysfunctional family deal with a secret and subsequent years of abuse from silence and non-response and accusations of mental instability. Instead psychiatrists have hampered the true facts of the serious reality of this illness from being known and not much else.
     
  11. Enid

    Enid Senior Member

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    Can't help but see it as "protectionism" operating within the powers that be. And why so unless the medics had something to hide.
     
  12. max

    max *****

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    Received a nudge today to visit the National Archive - there's been a development.

    FD 23/4553 has grown some more pages and therefore a few less pages are now withheld in FD 23/4553/1.

    Formerly redacted pages include;

    Additional information has been added to the 'Highlights' document. This relates to the infamous meeting of psychiatrists and scientists (CIBA Foundation Symposium 173 {may 1992} isbn. 0 471 93448 8)

    The symposium comprised a 'balance' of psychiatry and 'real' medicine. I say 'balance', perhaps I should have said 'bias' - the psychiatrists were abundantly represented. Yes Mr Wessely was there, so was Mr Sharpe.

    To grasp the importance of this please get hold of a copy and read the presentations and the discussions that follow each chapter. Enlightening reading to say the least. (as an interesting side note - the (unknown) expected retrovirologist speaker was a last minute no-show - an alternative was dropped into the procedings who went on to explain there was no retroviral link - phew, that was lucky !;)

    The MRC appear to have taken a surgical approach to the discussions with this 'Highlights' document - they neglected to report the many comments and in depth discussions made by the scientists.

    Also released are documents that relate to MRC refusal of research funding applications. Strange how the MRC descibe ME as a condition of unknown aetiology and yet for the past 2 decades they have ploughed every penny of public money into psychiatric research despite the ever-growing mountain of evidence pointing in the opposite direction.

    Finally (as I've not had the time to read through it all), we can now view the formerly redacted document that was placed in the file until 2071 by mistake - just how can a document be so carelessly misplaced? It is the "Confidential discussions on the selection of candidates" document.

    The door opens a little more -:thumbsup:
     
  13. Mark

    Mark Acting CEO

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    Thanks for the update max. Some of these files are available online from the national archives site, do you know whether these new ones are also now available online, and if so, do you have a link to them?

    Also, some time ago I spent a day or so trawling through FD23 ("the S Files"), and I found the titles of the other documents in the archive quite intriguing - it gave me a feel for the general contents of that particular archive, which I would sum up as "possible harmful effects on human health due to new science, technology and industry" - everything from the effects of high heels on womens' health, and occupational health impact on steel foundry workers and coal miners, through to radioactivity and vaccine trial data from the 50s and 60s.

    Anyway: I got the impression that there are an awful lot of files in that archive that are open for public viewing but which haven't yet been requested, and that once this has happened they can be posted online as PDFs like some of the ME files are. It seemed to me that putting these files in proper context, and opening up the rest of these files to greater scrutiny, could be helpful to us. Do you know anything about the status of the rest of the files in the archive, and whether there is any kind of organised group online pursuing access to these and other secret files? The way they are all presented is tricky to navigate through at present - you have to go through page by page to see all the titles - but anything that opens up such information more widely has to be a good thing IMO.
     
  14. max

    max *****

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    Hi Mark

    Here's the address -

    http://www.nationalarchives.gov.uk/...asp?queryType=1&resultcount=1&Edoc_Id=8553429

    it's a free download, just click on "add to shopping", enter your email address and its yours. Hope the link works.

    It may be useful if lots of people download it - just to show the National Archive that there is interest.

    I'm not aware of anyone else going after these files - I am sure there is, but they're probably doing it the same as me - ie, not 'organised'.

    The last time I looked at FD 23/4553/1 they had not updated its content description - it's still showing as 40 pages - the files released are the ones I requested, I have a good idea of the remaining contents - I'm already working on the follow-up request.

    I'm sure you're right in thinking there are many files in there that are relevent - 'our' history is one that has been hidden for many years - 'plausible deniability' is heaped up in a massive pile in the darkened corner of some back office, behind a door that is firmly shut with a 'do not open until they're all dead' sign attatched to a very large padlock.

    I still wonder why the DWP are keeping files closed until 2071 relating to benefit claiment descriptions of their illness (ME). Did they believe this issue would go away as suggested by Klienman at the symposium where he predicted that in 10 years time (by 2002), that as in the pain field, the central issues in the 'CFS' field would be social rather than medical or scientific ...... This is very murky territory.

    I think the file I am going after is important - I believe it will prove the bias shown by the MRC in their chosen direction in granting funds to the Wessely school 'researchers' - The Highlights' document is so biased in its reporting - The main problem being the gaping chasm that exists between 'it' and what was actually discussed at the symposium. The MRC have quoted from this document as if it was the unanimous belief of all those present - it was not.

    This is only a small step, but it is a step in the right direction.

    max

    PS. Go Norway!:D
     
  15. ukxmrv

    ukxmrv Senior Member

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    Hi Max and Mark,

    I did the download and thank you.

    It was a walk down memory lane to read about the infamous CIBA Foundation meeting in 1992 again. I'd never seen this particular review before but I did hear of the Shorter talk.

    My favourite CIBA quote was under the Gender Issues section and reads

    "there was no suspicion that CFS was the example of a male dominated medical profession labelling a section of the female population as malingerers"

    Gee that's good to hear - I must have imagined it then! :D
     
  16. Mark

    Mark Acting CEO

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    I am reading through the redacted file now. I've rather lost track of which file is which now (this one seems to be ordered slightly differently from the last one I saw; the previous one I read began with the Behan Report and was followed by a shorter, rather scrappy report by Wessely about psychosomatism and 'managing' ME/CFS), but I don't recall seeing the redacted sections of the CIBA Foundation report before, and they seem to me to be the most compelling evidence I've yet read in these files to indicate that they do indeed conceal suspicious information, rather than merely obscuring personally identifying data regarding patients and stakeholders. The rest of the documents after the CIBA report, mostly letters from patients and the responses, do obscure the identifying information...but the CIBA report's missing sections don't seem to fit that description...

    First, I thought I'd better refresh my understanding of "redaction", and the wikipedia explanation seems appropriate enough to mention:

    http://en.wikipedia.org/wiki/Redaction

    It seems fairly clear to me that the redacted information here which is still selectively withheld is not solely restricted to the protection of named individuals...

    The notes from the CIBA Foundation meeting notes contain a few selected sentences which are still obscured from public view. The context of these obscured sentences makes them highly suspicious, especially to those aware of the historical context of DeFreitas' work...I'll reproduce those sentences here, starting at the bottom of the second page of those notes, with the first section in which information is obscured...the Virology section...

    Why should it be necessary to conceal the identity of the retrovirologist who failed to show up to this meeting, one wonders?

    The next obscured fragment is from the Sleep Disorder section:

    The only other short fragment of this 5-page document which is obscured has (unlike the others) an additional marker emphasising that it is "Redacted under FOI Exemption S40 Closed until 2071". That section reads:


    It frankly is hard to believe that there is no significance to the specific sections of this document which have been obscured. That text concerns:
    (a) at the end of the DeFreitas investigation, the unexplained absence of the retrovirologist due to present on that matter, and their last-minute replacement by another virologist who found the absence of the retroviral sequences
    (b) whatever Moldovsky of Toronto "appeared to be"
    (c) some lines concerning the introduction of cognitive and behavioural therapy "without theoretical foundation".

    There can be little doubt that this period of history marked a significant change in ME/CFS policy in the UK: to cease (public) investigation of the virology of CFS, and to introduce cognitive and behavioural therapy to manage the condition "without theoretical foundation". Selected sentences in the documentation regarding the (retro)virology and the introduction of CBT remain obscured from public view until 2071, and such omissions from the public record will only further fuel conspiracy theories about the origins of ME/CFS.
     
  17. Enid

    Enid Senior Member

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    Thanks Mark for your input - it does look like "this period of history marked a significant change in ME/CFS policy in the UK" - sort of something writ in stone and where all our problems began.
     
  18. max

    max *****

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    It is difficult to know where to begin with the CIBA Highlights document - there is so much more to it than indicated

    - there is a big chunk of information missing in the virology section (more than 2 lines) - the Behan reference is notable in that he spoke of being approached by a vaccine company who were having issues with one of their antiviral vaccine trials - they (nameless company) had the problem of intractable fatigue in almost 100% of cases - Behan continued by saying "I have seen a case of post viral fatigue following rubella vacination" - he also noted " with other vaccines you can find the same complication"

    The Highlights document then references Elaine De Freitas paper,

    the last minute replacement speaker (the original transcript makes no mention of this {that I have found}) "produced results showing the absense of retroviral sequences in the samples studied and gave a detailed analysis to explain the discrepancies with the DE Freitas paper."

    This is odd - on page 168 Folks admits he has not seen the de Freitas paper concerning an exogenous retrovirus. How can a "detailed analysis" be given when he has not read the paper?

    The discussions then continue in a similar fashion to that witnessed recently with XMRV - namely, other labs having problems confirming results - it is notable that the psychiatrists have a big 'say' in what is and what is not, meaningful research in virology.

    I believe the Behan redacted section is along the lines of his findings that "preliminary data supports the view that while there may commonly be asymptomatic enterovirus infections of peripheral blood, it is the presence of persistant virus in muscle which is abnormal and this is associated with 'PFS'"

    This is obviously something the MRC did not want in the public domain. They 'needed' to keep it on the Wessely route.

    Mark, you mentioned this bit,
    "While keeping an open mind on the virus issue, members were increasingly drawn to the idea that the search for a single identifiable cause of CFS is meaningless because it is a multifactorial disorder. "

    This was not a consensus - it was spoken by LK Borysiewicz. His actual words were, "The point about the triggering of an event is that a multitude of precipitating agents acting through a final pathway may be involved; thus the search for a Holy Grail of 'the virus' triggering CFS is a nonsense!" Borysiewicz did not like this approach. But there were more voices and opinions given. This man has many interests, he's been involved as a consultant to Cantab Pharmaceuticals plc; consultant to SmithKline Beecham RIT (Belgium); former CEO of the MRC (!) - he has many interests - on his watch at the MRC he elevated the Neuro and Mental Health Board's allocation of funds to 2nd on the MRC spending list - a bit odd for A VIROLOGIST. He has also worked with Mr Sharpe (ref: Sharpe M, Archard L, Banatvala J, Borysiewicz LK, Clare AW, David A. Chronic fatigue syndrome:guidelines for research. JR Soc Med 1991;84:118-21.) He is not exactly, from our point of view, ever going to represent 'us' in a favourable light.



    There are so many discussions that were not incuded in the Highlights document - my typing is slow, you'll have to get a copy and read it - all the evidence that the shrinks were determined to dominate this field are in these discussions and it is blatently shown when you read the original transcript of the events in May 1992.

    Mark - your observation that the Highlights document has redacted sections that are not exempt from disclosure using their quoted section 40/41 and data protection is correct. This is how I argued the case with the NA and the MRC - they have used the wrong exemptions. Worse, they initially reviewed the case when I originally applied - the Head of Freedom of Information personally assured me everthing was above board and all exemptions were correctly applied - how can this be the case if they have now released this information to me? I had to show them the original version of events - I contacted people (not MRC members) who had stuff in the file - one in particular assured me it was not personal data (the exemption used) - they told me what it was and I then told the MRC - The MRC have something to hide - it is obvious to me the MRC need this hidden, perhaps this document has played a role in steering their funding? - it is written by an MRC member (that the MRC refused countless times to disclose - however, I know who wrote it), it is totally biased toward the psychiatric description and I believe it was shown to the Neuro & Mental Health Board who decide where funding goes - they declined every single bio medical research application they have been asked to fund.

    I believe that, en masse, people with ME should refuse to give consent for ANY psychiatric treatment - we need to fight these authorities - we need to question everything they say - we also need to shout louder - much louder.

    max
     
  19. max

    max *****

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    as a quick 'PS'

    the symposium comprised of 27 participants - more than half were psychiatrists.
     
  20. ukxmrv

    ukxmrv Senior Member

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    Osler's Web page 589

    "When it became clear that Elaine DeFreitas would not attend the Ciba Foundation's 173d symposium, the CDC's Tom Folks was asked to fill the vacuum. Folk, afforded less than 5 days notice, recalled he went from the plane directly to the Ciba foundation's stage in London to read his paper"

    There's a list of the participants at the symposium here

    http://onlinelibrary.wiley.com/doi/10.1002/9780470514382.fmatter/pdf
     

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